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“A Very Bad Day”

“It’s been a very bad day Mummy” was the phrase repeated continually yesterday evening after I collected Little Miss H from school.

Standing in the playground I knew it had been.  I could tell by her gait, by her facial expression, by the purple bags under her eyes against her too pale skin, by the sadness of her aura.  As she slowly walked towards me, scuffing her boots along the salted concrete of the playground, her eyes downcast, her hand up to her mouth chewing her sleeve and her water bottle hanging forlornly from her other hand, I knew we were in for a tricky evening.

I suppressed the urge to say “stop scuffing your boots” (do you know the damage the salt does to the leather?), or “stop chewing your sleeve” and instead just held my arms open for her.  She doesn’t usually like public displays of affection especially at school (“It’s against the rules to hug and kiss at school”) but I could see she needed some overt love.

She didn’t come into my arms for a cuddle but she was demure and allowed me to touch her arm.

Her water bottle had been broken that day and she was frightened she’d be in trouble.  Mostly though she was just sad.  Disproportionately heartbroken actually.  You see change is hard for her.  Saying good bye to things is really hard.  Her stuff is her portable safe space that she attaches so much love and importance to, it keeps her grounded so to have a piece of it broken is like someone throwing a brick through your window.  It is devastating for her.

Of course I reassured her that the broken water bottle could be replaced.  [No it won’t be the same one, it’ll be a new one but you can choose it.  No I can’t fix the old one.  Yes I know X person gave it to you for your birthday and yes I know it’s the fourth one that’s broken in however long. Yes I know it matched your pencil case and yes I know it was a ‘Frozen’ one].

With an unexpected burst of energy she was suddenly confrontational.  These shifts come out of the blue.

We were due to take Tiny Miss H to Rainbows and this was suddenly proving too much for her.

She was shouting at me that she didn’t want to take her to “stupid rainbows” and it wasn’t “fair”, that she’d “be bored” and why should she have to go with us just because Tiny had an activity…. And so it went on.  The real issue is she wanted her safe space, she wanted to hunker down after an exhausting day.

The challenge is enabling Tiny to maintain an ‘ordinary’ life, which includes after school activities, at the same time as supporting Little’s needs.  If anyone has the answer on how to get the balance right please let me know.

There isn’t an option, she is eight years old, she was coming with us, so with my arm wrapped tightly around her shoulders we walked towards the car.  The deep pressure, once she’s ready to let me touch her, is very reassuring for her and being hypo-sensitive she needs a very tight squeeze. So it was that I held her as firmly as I could with one arm whilst holding Tiny’s hand with my other hand and walking clumsily as if in a sort of three legged race, bags bashing against my shins, all of out of sync, we somehow managed to get to the car!

That’s when she said it “it’s been a very bad day mummy”

Chats in the car are usually the most successful; no expected eye contact, the crowd and melee of the playground has dispersed and we are away from the source of stress.

It turned out that she had been “mobbed” and crowded around at lunchtime in the playground and she didn’t have the ability to extract herself.  She didn’t know what to do, what to say, who to go to for help.  So stuck in the mob, she drowned.  She’s carried that with her all afternoon.

The physical toll it had taken on her was visible to see.  She was anxious, stressed and absolutely exhausted.

This on top of the broken water bottle made it “a very bad day”.

Within the 7 minute journey home she had told me it was “a very bad day” about twelve times.

This is echolalia, repeating herself is a form of stimming.  It helps her cope with anxiety.

When she has bad days we have a ritual which helps her get from the car to the house and that is a “Mummy squeeze” once in the kitchen – a prolonged super tight cuddle.  It physically hurts me she is so strong, but it is what she needs so squeeze away we do.  I feel like a tube of toothpaste being squeezed, I can barely breathe, she feels like I’m lightly holding her yet I’m using as much force as I can muster!  “It was a very bad day” she mumbles into my chest.

This helps her calm and from there I was able to persuade her that whilst Tiny was at her Rainbow’s Pyjama party we would go and choose her a new water bottle.

Meanwhile she’d also clocked the box of books in the hallway that we inherited a while back from cousins and I’d been storing in the garage.  Luckily they proved a timely distraction!  “It was a very bad day mummy” she muttered to the books as she rifled through the box.

We successfully deposited Tiny at her pyjama party but with all the distraction I had forgotten her cuddly toy and blanket…cue a mini tantrum from Tiny!

Finally extricating myself from the clutches of the Tiny tirade – I escape outside frazzled and on tenterhooks to persuade Little to walk with me to the butchers before going on to buy her bottle.  Reluctant to walk anywhere normally I was braced for the fall out but in response all I got was “It was a really bad day Mummy”.  She was so well behaved in the butcher’s that they gave her a fudge.  She decided it had been worth walking!  “Still a bad day?” with an eyebrow raised, “Mmm” she shrugged, “it’s getting better”.

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On to the supermarket to buy her bottle, I managed to persuade her to make a practical and useful choice that would withstand at least some playground action without too much argument.  We’d been playful and chatty walking round the supermarket.  Things had turned around.  I was still on edge keeping it light, keeping her happy.  Then we bumped into Tiny’s class teacher who stopped to chat.  The transformation from playful and chatty was marked.  Little Miss went quiet and couldn’t make eye contact.  Out of the context of school, her confidence had melted away and her anxiety kicked in.  To a stranger this would appear as ‘shyness’ but it’s different.

Selective mutism is an extreme social anxiety that results in an inability to speak.  It is involuntary and more than simple shyness.  I’m proud though as she did manage to squeak something to me as the teacher was walking away.  Then straight back to being chatty with me once we were safely alone again.

At the till, the cashier told us the amount and Little Miss repeated it in various voices, over and over and over again.  Anxiety making her repeat the words.  Again, her echolalia.  The opposite if you like from selective mutism.  Still anxiety driven and not necessarily ‘appropriate interaction’.  I could see the anxiety ramping up so a quick distraction technique was needed.  Her forte is maths so I made it her job to tell me how much I still owed each time I produced a coin and that busied her brain but in between each amount she still repeated the total amount in a strange voice.  The cashier was so patient, smiling and friendly and put absolutely no pressure on her, instead only complimenting her on the maths.  The fact there was no queue and no one else around at that moment helped all of us enormously.  I didn’t feel stressed or self-conscious, and Little Miss just did her thing.

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Once back in the car she asked for water and I didn’t have any.  I, almost flippantly, suggested she run back in to buy some.  My genuine intention was to buy time whilst I was finishing putting something away in my bag before going back in myself but to my utter astonishment she said “OK”!

So…We talked about what she would do, where she would go, how to choose what she wanted, where she would pay.  We talked about the change she’d wait for, the route back to the car and the fact I would not move from the spot I was in.  We land marked where I had parked for her to reference it.  It was a HUGE amount of information we covered.

She hesitated. She took the coin.  She ran.  She went round the corner…… I watched and watched and watched, heart hammering and holding my breath until finally there she was running back with a bottle of water in her hand, a smile on her beautiful face, pride in her eyes and flushed cheeks to show for it.

She had gone round the corner to the door of the shop, walked in, turned right to the fridge, chosen still water (not flavoured, not fizzy, just plain , it’s all she drinks), she stood in the queue with two people in front of her and waited calmly (“feeling very nervous mummy” she told me), and when it was her turn the same lady recognised her and helped her through, I’m still not clear whether she actually spoke, but she waited for her change, and ran back to the door, turned left, round the corner and sprinted back to the car “7 spaces down” she told me.  Climbed in out of breath, heart hammering (or was that mine?), asked me to open her water and drank it.  “I’m so proud of you darling” I told her,  “I’m really proud of myself” she said.

SHE DID IT.  I smiled with tears streaming down my face as we drove to collect Tiny.

“It was a very bad day mummy” she told me at bedtime, “but it ended well” we said in unison.

Anxiety vs Avoidance – As a parent how do I know I’ve got the balance right?

The burning question I always have as a mum is how do I know I’ve got it right?  How do I know my decision is the right one?

My daughter’s autism manifests in many ways but one of the main ways is anxiety.  She has enormous trouble decoding the world, processing the information and coping with change.

She can’t explain herself and self advocate when she is experiencing stress and it’s always with hindsight that the facts come out.  While she is experiencing stress she is in survival mode and doesn’t even recognise she is stressed until the stress stops.

This goes some way to explain how she holds it together at school and appears ‘fine’ and sometimes appears better than fine, she’ll be laughing and engaging but still comes home to fall apart.

This week has been so hard for her with staff illness and absence meaning unexpected substitute teachers.  Her week is not going to plan, it’s unfamiliar and the level of stress it causes impacts on everything.  She came home from school last night subdued and tense.  She was pale and clammy and being winter I suspected a bug, I took her temperature and it was normal.  She was not unwell, she is just exhausted and drained from the emotional toll of all the changes.  The evening was erratic, she was vacillating between tearful and angry, she was refusing school the next day and  refused to go to ballet that evening.

I decided to allow her not to go to ballet this time.  I usually push her outside of her comfort zones and insist she sticks to her commitments.  It was her choice to take up ballet and she’s really good at it, she has just achieved a high merit in her exam and was really (rightly) proud of herself. This term every week she’s tried to get out of going to class and I’ve not caved once.  It’s exhausting always battling and cajoling but it’s the right thing to do and furthermore we’ve paid for it, so she’s going!  She can never explain why she doesn’t want to go and I can’t get to the bottom of it so, commit she must.

After all the school changes this week however I felt that rather than fight that battle I’d keep her home and let her rest and hopefully increase the chance of her managing school the next day.

All evening her stomach was churning with anxiety about the following day at school.  A totally new teacher she has never met is taking them and this is all too new.  There are too many unknowns that haven’t been planned, prepared and practised.  It’s overwhelming for her.

She woke up this morning claiming illness.  It’s really avoidance.

My main aim is to get her to

  1. Correctly identify what she is feeling
  2. Correctly describe/label what she is feeling/experiencing

We have spent a lot of time talking about ‘the little boy who cried wolf’ over the years, we’ve read the book more times than I can count.  On an academic level she understands the concept but she is not equipped to manage putting it into practice.  So every time she experiences anxiety she claims illness.

She is eight years old.  Now is my time to teach her to recognise what her body is telling her.  To teach her how to self advocate for that.  To teach her that she will be believed when she says she is  feeling anxious and that it’s nothing to be ‘embarrassed’ about [her words].  It’s our chance to prove to her that she will be respected for the recognising her feelings and limits.  It’s our chance to nurture her, to build her into a strong person who can identify and manage her body’s signals.

We also have to be careful not to be manipulated every time she wants to get out of doing something for any reason other than her crippling anxiety.  She’s very bright, she’d make the connection and employ the tactic if she felt it would work.

So, as a mum, how do I know when to push her and when to nurture her?

Mental ill health in young people is on the rise.  The amount of pressure our children are under is at an all-time high and is in some cases damaging their psyches.  The amount of help available is minimal as the NHS mental health service is at crisis point.  Prevention is better than cure, especially when ‘cure’ relies on patchy service availability.

Autistic girls are a particularly vulnerable group and I’m very conscious of that.

Am I harming her or helping her by pushing her out of her comfort zone, by making her go to school?

What is the right answer?

I’m so proud of her, that today, with my and the school’s help she managed to go in.  I managed to tread the fine line of ‘coaxing without demanding’ well enough to get her to school and then with their help through the door, they are managing her transition into and through this tricky day.

Are they doing it right? None of us truly know.  Are they doing their best? Absolutely.

Am I worried that my daughter is suppressing her anxiety to meet expectations? Yes, very.

Do I feel conflicted about this? Yes, incredibly so.

Suppressing her anxiety is different from coping with it.  Suppressing it is quashing it, ignoring it and denying it which leaves it simmering deep down causing damage and delayed presentation.  Coping means addressing it, solving it, learning from it and leaving it behind.  It’s a fine line to find the balance.  How do I know I’m getting it right?

Change = Anxiety = Implosion

h2au-anxiety-implosionLittle Miss H is having a very tricky week (And it’s only Tuesday!)
We’ve had to miss ballet this evening as a result and she’s not coping brilliantly at all. She’s currently decompressing with her “tool kit” of sensory toys. She’s been incredibly erratic changing from argumentative to tearful to quietly angry and I’m exhausted, so goodness only knows how she must feel. It’s different from a full blown explosive, aggressive melt down, it’s more an implosion of anxiety.

It is all because her teacher and the usual substitute both of whom she knows well and trusts, are both off ill. As a result both yesterday and today she has unexpectedly had a different teacher. It’s someone she knows (and likes) at the school but hasn’t been taught by before. This change has caused her immense anxiety and this prolonged build up has culminated in this implosion. It’s involuntary and she can’t control it. Yes it seems irrational to me, does that frustrate me? Absolutely. Does that matter? No. I can not let my frustration inform my reaction. It does of course because I am human, but I do my best to count to twenty and mutter under my breath behind the cupboard door to enable me to be patient with her. I vacillate between calm and sympathetic to irritated and impatient. Which in turn leads to me feeling guilty and defensive. You see I am tired, sleep deprived and poorly so this reaction and the resulting unpredictable behaviour from her have me like a cat on a hot tin roof. Furthermore some of her calming toys are noisy and with my headache they are driving me nuts!!! Obviously I can’t react so here I am, telling you lot about it, hoping you won’t think I’m horrid for not just being a bundle of sympathy for my blessed child. Obviously I’m sympathetic but I’m nearing the end of a frayed bundle of nerves I think…

To really add sprinkles to the cherry on top, the teacher she currently has needs non-contact time tomorrow so it means a further teacher is coming in. It is a teacher she has heard of but doesn’t know. She doesn’t even know her name and is beyond worried about it. This has tipped the balance and she now can’t cope with it all. She’s anxious about every aspect from uncontrollable variables to things that just wouldn’t cross my mind. I’m so impressed with her that she is now able to (partially) vocalise her concerns but she doesn’t at school and it all comes out at home.

I’m not convinced I’ll get her to school tomorrow but it’s bedtime now and I’m not even sure she’ll get much sleep, so we will cross the school ‘bridge’ tomorrow…..

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A darker side of Autism

** trigger warning**

Below is a post from my personal Facebook timeline from two years ago.  I posted it not long after we’d moved up here to Scotland.

Those of you who have read past posts may be aware that we have had a struggle getting support since our move to Scotland.  That despite a firm diagnosis of Autism some ‘professionals’ doubted Little Miss H’s diagnosis.  They even accused me of making it all up.  We have been accused of bad parenting and emotional abuse; it was claimed by some that getting her diagnosed was emotionally abusive! (I’ll just leave that there for the moment but I have a separate post in mind about that for another day).

The fact that those accusations happened at all is beyond belief but when I look back at behaviours and manifestations that Little Miss H has endured and suffered through (and still does) it makes my blood boil that there is so little compassion (and support) for such a little girl who deserves to be acknowledged for who she is, specifically as an Autistic little girl.

It breaks my heart that a child would feel such anxiety that she’d pick her skin to the point it bleeds.  She has done it since she was very young but it had just dawned on me that what we were dealing with had a name.  That name is ‘self-harm’.  Obvious with hindsight I know.   At the time though it hit me like a sledge hammer, she’d been doing it since she was 2 or 3 and at the time of the post she was 6.  The impact this had on me was huge.  The realisation that this was a very real aspect of her autism felt overwhelmingly suffocating.

The fact that she felt anything strongly enough to drive her to the point of hurting herself made me feel like I’d let her down.  The panic I felt that I hadn’t previously done more to fix it or support her through this behaviour left me feeling substandard.  The fact I had ‘allowed’ her to feel so bad broke me inside.

Obviously we had tried many things to help her not pick her skin.  I thought it was partly sensory seeking behaviour and we tried many distractions and redirections.  I did notice it got worse with anxiety and we tried to deal with the anxiety itself rather than the behaviour.  It’s not like we had ignored it, been blind to it or not been pro-active about trying to help her.  It’s natural that I felt sad but why did I feel so bad, so guilty?

Part of my reaction was to force myself to acknowledge it out loud.  Part of my reaction was to share in case it helped anyone else and part of me wanted to educate others about the generality of this, so often unspoken, part of autism.  Part of me though just wanted to say ‘my poor baby is struggling, I find that hard and life isn’t perfect’.

So I shared on my personal time line.

I got so much support from many friends but was criticised by some too for talking about it so publicly.  How very British, to suggest I keep it behind closed doors.  I felt ashamed that I had posted about it when I was criticised.

I also realised then that Facebook served as more that a social media outlet, it was part of my support network.  I had moved to a new place where I didn’t really know anyone, was struggling to get professional support in place for all our needs.  Facebook was a world where people ‘got it’, so I resolved not to feel shame and to embrace the reality of our life.  I need the support network my ‘invisible’ friends give me.  (That’s you lot by the way – thank you!)

More though, telling our story may help someone and if we can make a difference in one person’s life, make one person feel less alone, then it’s all been for something.

So to those that find it triggering I’m truly sorry, please don’t read anymore and come back for the fun stuff elsewhere on my FB page later – hugs and strength to you.

To those who just don’t want to know scroll on by.

For those of you who want to learn, understand and support – the original post is below.

“So Little Miss H is a self harmer.  A horrible statement to make as a mother – I feel like I have failed her.  Her Autism causes her such anxiety that she hurts herself and makes herself bleed.  She is 6.  This in itself is sad enough but what breaks my heart is she now seems to realise that it’s not “normal” behaviour so she is now hiding it and lying about it. This further masks the problem that causes her to do this in the first place making it even harder to identify the cause and help her.
It’s no wonder that the average age for diagnosis of Autism in girls is 12, the professionals involved with Little Miss H still can’t always readily see her Autism manifesting itself and if she’s now hiding some of the most overt tell-tale signs how on earth am I going to get her the help she needs?
I feel like I am at the bottom of a hill….every time I try climbing the hill it turns out to be a volcano, erupts, pushes me back down and just grows into a bigger hill….. sometimes life is a bit of struggle here”

I’m thrilled to say that we are managing this aspect really well at the moment – she still picks when anxious but her self-awareness as she matures is helping us find other, healthier coping mechanisms/management strategies and her scars are fading.

We still don’t have support up here but I have learned that I am enough.  She needs me, I am here and I always have and will do my best for her.

To my brave, strong, amazing Little Miss, you are safe and I love you.  You will never have to walk through life alone.  I am so proud of you, every single incy wincy bit of you.  Thank you for being you, Mummy xox

An Open Letter

We relocated from England to Scotland two years ago and arrived with formal diagnoses in place.  Our transfer of support should have gone smoothly yet we have found ourselves in the position of having to justify those diagnoses and fighting for acceptance.

It wasn’t easy to get Little Miss H diagnosed, everything took time, it was a slow process with long waiting lists but after presenting enough evidence and after assessment over a prolonged period the professionals found that she met the criteria for an ASD diagnosis.  Our family are in no doubt that it is the right diagnosis given her father is also diagnosed and we received it as a welcome relief.  It enabled us to access supports for her that otherwise wouldn’t have been available to us and goodness knows I was on my last legs doing it all myself – I needed help.  More than that I needed recognition of our reality.  I needed someone to ‘see’ us.  This was all at the same time that Tiny Miss H was under investigation with ultimately being diagnosed with a very rare chromosome deletion.

Regarding my Tiny Miss and her diagnosis I was told by various professionals at the time; “Good catch Mum”, “Wow, they always say the Mother knows”, “your instinct was spot on”, “she’s very lucky to have been diagnosed so young, it’s a chance to make a positive impact on her prognosis”, “not many would have caught this so young, well done” and so on.

I even have a hand written letter from one of our most significant professionals involved with us, who on hearing we were moving to Scotland wrote to tell me what a pleasure it had been to work with us, to have been part of Tiny Miss H’s progress and she wrote about me “you are the PERFECT therapy mummy”.

We had very positive relationships with mutual respect and I was reluctant about losing that when we moved.  I was reassured by many that I had established good relationships once and I’d do it again with great referrals up to their counterparts and it would be much easier this time round.

Imagine then soon after moving up here to be falsely accused by social work of emotionally abusing my children by having them diagnosed, of ‘heightening’ their needs and making up their conditions.

To be accused in essence of Munchausen syndrome by proxy – they didn’t say as much in those words but the implication was clear.

It has been 18 months of hell.

It’s been a hard fight to clear my name but we are now gradually coming through the other side with the accusations now withdrawn, vague apologies given for our distress but a general lack of support to help us recover.  The shock, hurt, damage to my self-esteem and erosion of my trust is still an ongoing issue as a result.

We have the advantage of living on the border of two healthcare areas and we were accessing services for the children in area A, since the debacle of the accusations we have now transferred over to area B to have a clean slate and a fresh start. A second ‘move’ (even though physically we remain in the same place) means tens more appointments and the whole rigmarole of meeting even more new professionals.  Exhausting but worth it for the clean slate.

At one of these appointments yesterday I was made aware of a report that I knew nothing about stating that a consultant who had met us for an hour, hadn’t seen much to support [Little Miss H’s] diagnosis.

This undermined the fresh start and all it did was cause confusion and raise questions from the new consultant which then led me to having to justify and explain and relive the nightmare.

Below is an open letter to the consultant who wrote that report, which I have written as a reaction to the above.

Dear Professional

I come to you with trust and an assumption that you will use your power wisely.

I trust that you will listen and that you will hear us.

I trust that you will respect us and appreciate our story.

I trust that you have experience in the subject we are speaking to you about and that you have faith in your colleagues.

I trust that you will afford me mutual respect and trust.

I understand that you spent a long time learning and training to become a doctor, I respect that fact.

I expect you to respect my intelligence, my experience, my intuition and my intent.

I expect to work with you, to be a team, to work together.

To behave one way to us and then write something else in a report to your colleagues that I have no knowledge or sight of is a betrayal of that trust. .

Your casual dismissal of your NHS colleagues’ diagnosis of my daughter is astonishing and quite frankly worrying.  You discredit them without taking time to question or investigate.  That by extension, in my eyes at least, discredits you.

My mind boggles at the arrogance of your reaction.  To immediately assume you are right rather than resolving to learn from this diagnosis, from us, from her.  Where is your enquiring mind, that is presumably needed for continual growth as a doctor?

It is not fair to put my child at risk of lesser service and treatment by casting doubt and confusion over what was an unambiguous diagnosis.  By casting a shadow of doubt you also serve to undermine me and my credibility in my role as her main advocate.

What makes you think that after an hour long appointment with me and my daughter you know her better than the team who diagnosed her over a period of two years?

That hour with you was not an in depth assessment, it was a surface level chat with me whilst my daughter tugged on my arm to leave until she was persuaded to sit, draw and colour in ‘nicely’.

You didn’t express any doubts to me or give me any opportunity to explain how her autism affects her.  Not once did you ask how the diagnosis was reached, if you couldn’t see it, not once did you give any indication that you disbelieved us, not once did you give me the opportunity to clarify for you the manifestations of her autism – you never asked.  This shows your lack of respect for me and for my daughter’s diagnosis.

Your callous disregard for my opinion, my experience and my expertise is insulting.

As a mother I KNOW MY CHILD.  That is all I should need to say, but if I need to justify myself my degree (Bsc(hons) in Psychology with child development being my area of specific interest) and my life experience which includes nannying and teaching children supplements my parental experience.

I have lived with autism, ADD and dyslexia in my husband for 11 years and I have experience of parenting an autistic child for 8 years.

I’d say in terms of both intensity and time this is at least equivalent to specialist training that you undergo to become a consultant.

I’m certainly not saying I could be a consultant but I am saying that I am an EXPERT in my child and my child’s condition.  Where your experience is broad, mine is specific.  But make no mistake it is no less valuable.

How arrogant of you to dismiss my daughter without even endeavouring to understand her diagnosis.  Every case of autism is unique and therefore an opportunity to learn.  How many girls on the spectrum have you dealt with in your career?  Regardless of the answer to that your level of expertise will not be more than mine in the case of my daughter, so at the very least the wealth of my experience is a valuable resource to be used rather than ignored.  We could have worked together for her benefit.  Instead my energy available to her is diluted by having to spend my time justifying myself and her diagnosis unnecessarily.

I can rationalise and justify why I know you are wrong, you cannot reasonably explain why you believe your colleagues who diagnosed my daughter and me to be wrong.

The average age for ASD diagnosis in girls is twelve.  The reason that early diagnosis is so hard in girls is that some, often in the high functioning section of the spectrum, mask, mimic and hide behind coping strategies.  They are chameleons in society.  They are masters at pulling the wool over your eyes.  They will only show you what they want you to see.  One often can’t tell that someone is autistic just by meeting them briefly.  IT IS A HIDDEN DISABILITY.  So from a medical stance the problems aren’t recognised but it doesn’t mean they aren’t there.   We come to you for help.

My daughter’s behaviour in appointments is often unrecognisable to me. She often behaves like a different person to the little girl we live with – she can be a Jekyll and Hyde.  She performs a role – the part is that of a little girl behaving how she thinks strangers expect her to.  She’s not relaxed at all.  It’s exhausting for her.  We spend a long time preparing her for appointments and it pays off.  She usually is distractable enough for me to focus all my attention on imparting a huge amount of information in a very short space of time.

She also behaves differently at school.  My husband (also diagnosed ASD) behaves differently at work than at home.  This is not unusual and is a very key part of high functioning ASD.  Having said that it is also a matter of interpretation.  My daughter’s manifestation of ASD is often visible if you understand what to look for.

Just because on meeting my daughter you can’t see her autism doesn’t mean it isn’t there.  It doesn’t mean she doesn’t need support.  It doesn’t mean I am making it up and it doesn’t mean you should discredit and dismiss us.

The very fact that my daughter was diagnosed at age five means firstly that medical professionals, trained in and with experience in the field of autism found her to be meeting the criteria for a diagnosis and secondly it’s meant that we have been able to access support.

This diagnosis has enabled EARLY INTERVENTION which in turn has meant that we have helped my daughter with coping strategies, we have worked on social skills and we have in place support, interventions and strategies that make her life easier for her to manage.

Add this support to a predisposition to mask and mimic means that meeting my daughter briefly probably means you won’t be able to tell she’s autistic and that’s OK.  It means it’s working.  It means our hard work to support her is paying off and her hard work is all worthwhile and it means that early intervention is the key.

If it is hard to tell that my high functioning daughter is on the spectrum then I take that as a compliment as a lot of blood, bruises (literal and metaphorical), sweat, tears and hard work goes in to that outcome.

It can take as long as eighteen months for my daughter to ‘let you in’ if ever, in terms of showing her true self to you.  Many people, even some of our own extended family haven’t seen some of the true issues that we as a family have to deal with due to my daughter’s autism.

Now she is eight she can vocalise that she behaves in a certain way at home because it is her ‘safe space’ and she ‘relaxes’.  This states to me that life for her outside home doesn’t feel safe for her and that it is hard work and not relaxing for her.  We all have a duty to understand that and respect that.

Being diagnosed at five is unusual and significantly younger than the average age of diagnosis.

The fact it is unusual must therefore mean that there cannot be that many doctors out there with extensive experience of such young girls on the spectrum.

Rather than suggesting ‘you haven’t seen much to support her diagnosis’ – how about resolving to learn from her?  I would suggest a better phrase would be “I don’t have enough experience to recognise it in her” then add it to your bank of experience.  Act with some humility and learn from it.  YOU DO NOT KNOW IT ALL.  After all if you’ve met one person with autism, you’ve met one person with autism.

If she had blood tests showing something you’d accept them without question.  Why not accept behaviours, traits and struggles as equally telling.

It is your duty to let the evidence guide you – but if you don’t listen to the evidence it can’t.

As a (loving, kind, resourceful, credible, rational, intelligent, eloquent, instinctive and intuitive) parent I know my children.  Life with them can be tough.  Please do not make it harder.

Thank you.

From a disappointed Mummy.